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Thanks @forestglip I need to get my head around using locuszoom sometime. I suppose this just tells is that there isn’t a genetic difference in the gene in people with ME/CFS, not that it is or isn’t involved?

Doctors have said doctors have neglected patients because of what patients said. And they’ve written that down. Why do the doctors get the benefit of the doubt here? Could they be, even if inadvertently, misguiding themselves and others? Once again, I agree we should combat the woo. I agree...

I don’t disagree with us needing to stop the woo and stop advocates from pushing it. It is unhelpful. Let’s work together to address that. Painting a picture of patients being the reason we are all suffering and denied care is I think unhelpful in many ways including in the goal of combating...

I don’t want to speak for anyone else but I understand the reaction and share it. Some of the earlier posts read to me like victim blaming. Some here have said doctors are not treating patients because of patients attitudes.

My problem with this is I went out of my way (and still do) to not be ‘one of those’ patients. I have spent a decade giving medics every opportunity to give me the basics. And yet… I can see the argument that people who are better than me but shout a lot of woo make it worse for all of us. I...

If anyone wants to learn a bit more about lipids and cell structure/membranes, this is a good overview from Khan Academy and their AP Biology course with two videos, a text overview and a short review.

If this is present in multiple cell types it seems like this could be a really interesting alternative to the channelopathy or GPCR antibody ideas, but which covers a lot of the same systems and symptoms we see from some other studies. I’m particularly interested with signalling and different...

Looks great, where did you get it @Kitty ? Mine arrive and have worked well on a try on one hand, much easier to cut and file smoothly well. Thanks all for the advice. BEZOX Sturdy Comfortable Nail Clipper Set Bona Fide Beauty Czech Glass Nail File

Good point. It may well be. Whatever @DMissa is happiest with.

Even if they know, the motivations to pump up your paper seem significant. The incentive structures for sticking to the facts in a measured way seem far less albeit more worthy

Looks really interesting and lots to digest and think about. And thanks for the summaries and discussion from those more knowledgeable on this stuff! @DMissa I’d like to create and share an audio version of the paper if this is okay with you? If you have the plain text of the paper available...

I know it’ll be a while but I’m certainly looking forward to when they’re able to talk more about this and their process. Grounded speculation is always interesting!

Depends. Today worse, but that’s because I did too much me tal activitt yesterday so am paying the price. Sometimes better though. Overall sleep is ‘good’ for me but if the sleep or my body is ‘bad’ then I will feel worse. And as in another thread sometimes sleep can leave me groggy or tired...

I expect it’s more a profit assessment than risk… They claim good performance. And if these results are confirmed (there has been no peer review) then performance does look good. And prescription renewals is one thing but this seems like a test and the goal is much wider adoption of the...

The shenanigans makes me less and less confident of the results they’re trying to make people confident of with their shenanigans…

I don’t disagree. More that my motivation in saying they have good intentions is that they really think they are doing something which will help people. I think they are wrong in this and many here would agree. But differences in opinion are not something it is easy to arbitrate. Even if we have...

Oh yeah “Example of a recording on an NK cell from HC” and “Example of a recording on an NK cell from a person diagnosed with ME/CFS”… that does rather spoil things. Figure 2 seems to aggregate results

I’m obviously in no position to comment on validity of any of this. But if it is, this seems like it would be interesting particular in the context of other studies which have shown possible calcium and ion channel involvement (including the precision life analysis). A few other questions it...

I’ve not managed to read it all but looking through the annual report there is some good stuff in there. It flags many of the problems we face. It has data on dissatisfaction and does raise the particular issues of severely affected patients. What I’m slightly confused about is the...

I agree @Amw66 How BACME’s approach shapes perception amongst medical professionals and the wider public which enables minimisation of severity is an important point. I’ve yet to come across anyone in the NHS who takes severe ME/CFS seriously, at all. And too many non medics think it’s just a...